We’ve written about the importance of advanced health care planning in previous blog posts (The Need for Advanced Care Planning, The Blue Folder: Making Final Wishes Known, and Make Your Wishes Known–Plan your future!), and shared the peace-of-mind advanced planning can provide when difficult decisions must be made. Advanced care planning is simply smart life planning—and can be one of the greatest gifts a person can ever give to loved ones.

Think about what is important to you and document your wishes in an advanced health care directive; if not for yourself, then for your loved ones. Be sure to name someone to speak for you when you can no longer speak for yourself, and talk to this person and your doctor about your wishes. You can download your state’s advance directive form, and begin the process today.

To learn more about advanced health care planning, we encourage you to attend our upcoming webinar Advanced Health Care Planning on May 14, presented by Susan Johnson-Drenth, JD, of JD Legal Planning. In this webinar, Susan will share the precautions and actions needed to ensure your wishes are carried out if you are unable to speak for yourself.

Conversations about living well and then dying well aren’t necessarily easy to have, but they are critical to the well-being of those we love. Finding a way to have this talk may bring great comfort and a special grace to those left behind. No one should be left wondering, did we do the right thing?

*NOTE: If you do not have access to an Internet connection, the Advanced Health Care Planning webinar will be broadcast in Hospice’s Fargo office, located at 1701 38th St. S., on May 14 at 7 p.m. If you would like to attend this broadcast at the Fargo office, please RSVP to Bonnie at (701) 356-1524 or bonnie.oelschlager@hrrv.org. For more information about this webinar or others, visit our website.

By Gretchen Dobervich

Editor’s Note: At Hospice of the Red River Valley, we’ve been privileged to partner with the Alzheimer’s Association on a number of educational programs. We have asked the Alzheimer’s Association to share information with our readers who may be facing the challenges of caring for a loved one with Alzheimer’s.

Alzheimer’s disease is a progressive, degenerative, neurological disease. Progressive, yes. It is much more than “being a little bit forgetful.” The disease slowly robs a person of their ability to perform long practiced skills, recall memories and the ability to care for him or herself. As people with Alzheimer’s disease live longer into the end stage of the disease, it is important for families and caregivers to recognize symptoms of the late stage and practice approaches for providing late stage care in their efforts to promote quality of life, preserve dignity and provide comfort.

The following is a list of progressed changes associated with the end stage of Alzheimer’s disease:

• Has difficulty eating and swallowing
• Needs assistance walking and eventually is unable to walk
• Needs full-time help with personal care
• Is vulnerable to infections, especially pneumonia
• Loses the ability to communicate with words

The following approaches to providing late and end stage care are from the Alzheimer’s Association’s website:

Skin and Body Health
Relieve body pressure and improve circulation by changing the person’s position at least every two hours. Make the person comfortable and keep his or her body aligned. Use pillows to support arms and legs. Learn how to lift the person. Avoid injury by seeing a health care professional about the proper way to lift and turn a person with dementia.

Keep skin clean and dry. Since skin can tear or bruise easily, use gentle motions and avoid friction when cleaning. Wash with mild soap and blot dry. Check daily for rashes, sores or breakdowns. Use pillows or pads to protect bony areas such as elbows, heels and hips. If using moisturizer, apply gently over bony areas; do not massage the lotion into these areas.

Maintain range of motion in the joints. “Freezing” of the joints (limb contractures) can occur when a person is confined to a chair or bed. Sometimes, it is helpful to try range of motion exercises, such as carefully and slowly moving arms and legs two to three times a day while the person’s skin and muscles are warm (like right after bathing). Be aware that range of motion exercises are not for everyone. Consult a doctor about whether they might be beneficial.

Bowel and Bladder Function
A person with late-stage Alzheimer’s disease may experience incontinence for a number of reasons, including a urinary tract infection or fecal impaction. First, see the doctor to rule out any medical problems.

Set a toileting schedule. Keep a written record of when the person goes to the bathroom, and when and how much the person eats and drinks. This will help you track the person’s natural routine, and then you can plan a schedule. If the person is not able to get to the toilet, use a bedside commode. Limit liquids before bedtime. Limit liquids at least two hours before bedtime, but be sure to provide adequate fluids throughout the day. Use incontinence products. Adult briefs and bed pads at night can serve as a backup to the daytime toileting schedule.

Monitor bowel movements. It is not necessary for the person to have a bowel movement every day, but if there are three consecutive days without a bowel movement, he or she may be constipated. In such instances, it may help to add natural laxatives to the diet, such as prunes or fiber-rich foods (bran or whole-grain bread).

Foods and Fluids
Everyone needs to eat nutritious foods and drink enough fluids to be healthy. But a person with late-stage Alzheimer’s may have trouble swallowing, which may cause food or drink to get into the airway and lungs. This can lead to pneumonia. To help the person eat and drink safely, make a quiet and calm eating environment. Serve meals away from TV and other distractions. If the person can eat at the table, use a simple place setting.

Allow plenty of time for eating. Allow at least one hour for meals. Don’t rush the person or force him or her to eat. Smaller meals or snacks throughout the day may work better than three bigger meals.

Make sure the person is in a comfortable, upright position. To aid digestion, keep the person upright for 30 minutes after eating. Adapt foods. Consult with the doctor to find foods that can be chewed and swallowed easily and safely.

Encourage self-feeding. Sometimes a person needs cues to get started. Begin by putting food on a spoon, gently putting his or her hand on the spoon, and guiding it to the person’s mouth. Assist the person with feeding, if needed. Alternate small bites with fluids. Make sure it’s all swallowed before continuing. You may need to remind the person to chew or swallow.

Encourage fluids. The person may not always realize that he or she is thirsty. If the person has trouble swallowing water, try fruit juice, gelatin, sherbet or soup. Make liquids easier to swallow. Swallowing problems put a person with dementia at higher risk for choking. Make liquids thicker by adding cornstarch, unflavored gelatin or food thickeners (available at pharmacy and health care supply stores) to water, juice, milk, broth and soup.

Know what to do if the person chokes. Difficulty swallowing can lead to coughing and choking. Be prepared for an emergency, and learn the Heimlich maneuver.

Monitor weight. While weight loss during the end of life is to be expected, it also may be a sign of inadequate nutrition, another illness or medication side effects. See a doctor to have weight loss evaluated.

Infections and Pneumonia
The inability to move around in late-stage Alzheimer’s disease can make a person more vulnerable to infections. To help prevent infections, keep the teeth and mouth clean. Good oral hygiene reduces the risk of bacteria in the mouth that can lead to pneumonia. Brush the person’s teeth after each meal. If the person wears dentures, remove them and clean them every night. Also, use a soft toothbrush or moistened gauze pad to clean the gums, tongue and other soft mouth tissues.

Treat cuts and scrapes immediately. Clean cuts with warm soapy water and apply an antibiotic ointment. If the cut is deep, seek professional medical help.

Protect against flu and pneumonia. The flu (influenza) can lead to pneumonia (infection in the lungs). It’s vital for the person as well as caregivers to get flu vaccines every year to help reduce the risk. A vaccine to guard against pneumococcal pneumonia is also available. (Usually, only one dose is needed, but in certain circumstances, a second dose may be given five or more years after the first dose.)

Pain and Illness
In late-stage Alzheimer’s, the person has more difficulty communicating pain. If you suspect pain or illness, see a doctor as soon as possible to find the cause. In some cases, pain medication may be prescribed.

To recognize pain and illness look for physical signs of pain, such as pale skin tone, flushed skin tone, dry, pale gums, mouth sores, vomiting, feverish skin, or swelling of any part of the body can indicate illness.

Pay attention to nonverbal signs. Gestures, spoken sounds and facial expressions (wincing, for example) may signal pain or discomfort. Watch for changes in behavior. Anxiety, agitation, shouting and sleeping problems can all be signs of pain.

Learn More
The Alzheimer’s Association Minnesota-North Dakota Chapter is excited to co-present “Memory Loss and End-of-Life Care” with Hospice of the Red River Valley on Monday, May 7, from 7 – 8 p.m. I invite you to join us and learn more about the end stage of Alzheimer’s disease and how hospice services can greatly enhance quality of life and comfort for not only patients, but also for their families. To register, visit Hospice of the Red River Valley’s website or call 1-800-237-4629.

Gretchen Dobervich is the Regional Center Director for the Minnesota-North Dakota Chapter of the Alzheimer’s Association’s Eastern North Dakota Regional Center in Fargo, N.D.  She has many years experience working in geriatrics including care giving, activity programming, assessment and long-term care marketing. She can be reached at (701) 277-9757 or gretchen.dobervich@alzmndak.org.

Does one voice on Capitol Hill matter?

When you are a North Dakota delegation of one, stepping off a loaded bus amidst a parking lot filled with loaded buses, you have to wonder. This was me, in late March, merging with my hospice colleagues into the steady stream of dark business suits, brief cases, rapid paces and protesters headed toward the Supreme Court on the sidewalks of The Hill.

Armed with pertinent information from the National Hospice and Palliative Care Organization, I entered the offices of Congressman Rick Berg and Senators John Hoeven and Kent Conrad to plead our hospice case.

In spite of all the political and health care-specific turmoil, I was not surprised to be well-received. The hospice mission, after all, touches so many lives. I had the privilege of meeting with the remarkably bright and informed staff people who carry health care portfolios for their respective congressmen. These people are a vital link between us and the congressmen, who—being human—must rely on at least some help to keep pertinent issues in front of them. The time, attentiveness, substantive dialogue and, in one instance, tears from these individuals assured me that hospice matters to them and to our congressmen.

This is no time to ask Congress for more money. Wisely, this was not the purpose behind hospice representatives storming The Hill in late March. Rather, we were collectively asking for some grace and common sense in how the future of hospice is approached in health care reform, as inevitable change occurs. This is a message congressmen can get behind—and I believe they will.

Still, I was a voice of one. So, rather than telling you about some particularly unusual protests occurring on the Capitol lawn, describing the exquisite tulip beds on the grounds, or even getting into the details of our hospice “asks,” I am inviting you to raise YOUR voice on behalf of hospice care in America. Your voice, you see, is not only added to mine, it is more important than mine. Certainly, people on The Hill expect to hear from me; it is part of my job. But, YOU? You truly are the constituents from whom our congressmen want to hear. Do YOU value hospice care? Has it touched YOU or people for whom YOU care? Is the service important enough to protect into the future? Are rural residents as deserving of hospice care as those in our larger communities? If so, SPEAK UP!

Your voice has probably never mattered more to the hospice movement as it does right now. Changes in health care have to be made. Certainly, all of us as consumers realize this. Hospice of the Red River has been proactively making organizational changes for years, recognizing the inevitable. But unreasonable, unfunded mandates and disproportionate rate cuts will bring us to our knees. All we ask is for common sense and grace. And then, our collective passion for the hospice mission will survive the present turmoil. Just some common sense and a little grace.

I invite you to learn more about the HELP Hospice Act. Or, to learn more about what you can do to help, visit the Hospice Action Network. For more information about Hospice of the Red River Valley, visit our website or call 1-800-237-4629.

Please, raise your voice in support of hospice care. You WILL be heard—your voice matters!

Susan Fuglie is the executive director of Hospice of the Red River Valley.

We know how challenging it can be to determine if someone is appropriate for hospice care–especially if your loved one has Alzheimer’s or other forms of dementia. We can help walk you through the process of identifying who meets the medical guidelines for hospice care, and help you understand what’s included in care for this type of condition. Likely, you have many other questions about advanced health care planning, including advanced directives, and how hospice care is paid for.

We are pleased to share this information with you in our upcoming Confidence in Care webinar series. We are partnering with the Alzheimer’s Association of Minnesota/North Dakota and JD Legal Planning to bring you information you need to make informed end-of-life care decisions. We hope you’ll join us for this informational webinar series:

Memory Loss and End-of-Life Care
May 7 from 7-8 p.m.
Learn the difference between Alzheimer’s and other forms of dementia, the unique challenges of caregiving and the benefits of hospice care for those individuals in the advanced stages.

Advanced Health Care Planning
May 14 from 7-8 p.m.
Learn the precautions and actions needed to ensure that your wishes are carried out if you are unable to speak for yourself.

The Medicare Hospice Benefit
May 21 from 7-8 p.m.
Learn about cost coverage for end-of-life care you are entitled to through Medicare.

To register, visit our website. For more information, call 1-800-237-4629.

If you do not have access to an Internet connection, the webinars will be broadcast in Hospice’s Fargo office, located at 1701 38th St. S., at the dates and times listed above. If you would like to attend a broadcast of a webinar at the Fargo office, please RSVP to Bonnie at (701) 356-1524 or bonnie.oelschlager@hrrv.org one week prior to the webinar.

* Note: This series is intended for the public; certificates of attendance for health care professionals will not be provided. These webinars are not eligible for CEUs.

There are many ways to engage your political representatives and encourage policies that sustain and enhance access to hospice care.

1. Contact your U.S. Representative and/or State legislators. Tell them you support the HELP Hospice Bill, and they should too.
2. Write a letter in support of the HELP Hospice Bill to the editor of your local paper.
3. Tell a friend.

Make your voice heard in support of hospice care. For more information about Hospice of the Red River Valley, visit our website or call (800) 237-4629.